Massimo's story

Today we went spent the day down in Hampshire at Grandpa and Mal’s. Herewith some pictures for your delectation. Those of you with sharp eyesight might notice Massimo’s lack of ng tube in some of the pictures. Unfortunately Massimo had a coughing fit at around 4 pm and coughed up his tube. (The nurses in St George’s Paediatric Ward kindly put it back in for him in time for his 7 pm feed.)

Massimo, was wide awake all afternoon and was fascinated by all that was going on around him. Meanwhile J and I enjoyed a delicious roast lunch!

Today was spent getting some DIY done around the house by J, whilst I took Massimo and the boys for a walk. Thanks to Justin we now have curtains in the dining room, coat hooks in the hall (finally the hat stand has gone!), a garden armchair in the garden, a mowed lawn and a new rug in the living room. I, on the other hand, had a successful walk – successful in so far as we all survived it intact – where we met Jo and her two cocker spaniels, Boo and Jake. We had a lovely chat walking around the common and were only cut short by Massimo’s need for his next meal.

In the evening, we went off to indulge in my favourite passtime, eating Italian food, at Bucci’s restaurant. Davide, the manager and friend, put us on a corner table by the window so that Massimo would be protected to a certain extent from any smoking, but there was in fact very little. We had a lovely meal and Massimo slept throughout even though it did get VERY noisy!

Just a quick entry to let you know that the medication for the reflux seems to be working wonders. Massimo has been a lot more settled today and his coughing has settled down dramatically. This morning he spent a good hour lying on his activity mat happily staring up at the various toys on there. Every now and then I would change position for him so he would see something different, but he seemed very happy. After an initial sniff around, the dogs left him in peace too!

Today was J’s birthday and we had organised to go out for lunch with friends of ours, Tommy and Lizzy – Tommy also happens to be the editor at the Fresh Produce Journal, but more importantly it was also Lizzy’s birthday. We had booked a table at Chez Bruce, a rather smart local restaurant. A lovely meal was had by all and, apart from a few grizzly moments, Massimo was the perfect 5th guest at the table. So we are venturing out more and more and doing as many normal things as possible. Unfortunately J returns to work on Tuesday and we will have to see how I cope alone. In order to hit the ground running I have already arranged to meet two other ex-NNU mums for lunch on Wednesday – no need to hang around now is there?

Today we went to our appointment at Great Ormond Street hospital (aka GOSH). The appointment was at 11.45 and I decided that we should leave the house at 10 am, primarily because we are ALWAYS running late and I figured that if we aimed for 10 am we might actually get there on time! Well, we didn’t leave the house until about twenty to eleven and managed to take a fair time getting there as we firstly took Westminster bridge instead of Waterloo bridge, then we encountered traffic near Downing Street, so doubled back onto the Embankment and turned left a little further up, then we went round in circles in the one way system near the hospital, finally drawing up by the entrance a little after half past eleven. J dropped Massimo and I off and went to park the car. I think Max and I made it dead on time. Kathy (a colleague of Justin’s) was also due to be at GOSH this morning with her son Leo, and as they had finished she came up to the 4th floor to find us – she was already there when we got there – but alas, and amazingly enough, the doctor was ready and waiting for us, we were ushered straight in. I managed to have the briefest word with Kathy, but apparently she was as pleased as punch to have finally met Massimo after hearing so much about him.

The Bulbar EMG was rather a painful affair for the little chap. At first it seemed to be simply some sort of stimulation of the nerves of first his legs then his arms, and a computer was measuring the reaction. Then came the facial bit. For the face he stuck a long thin needle first into Massimo’s double chin, then into his cheek at two different points and then he decided to do the double chin again. At this point Massimo justifiably wailed. It was all over by 12.10. Unfortunately the doctor gave us no indication of his findings and we have to wait for him to write the report and post it back to the NNU at St. George’s.
Continue reading “GOSH and NNU”

Monday was spent just at home recovering from a fairly bad night as Massimo needed suctioning every 20 minutes. Tatie Lucy and Georgie popped in in the afternoon for a cuddle (and to measure up for curtains!). Tuesday we successfully did our first trachy change at home under supervision, and went for a lovely blustery walk in the afternoon.

Wednesday we were very brave and embarked on a major family outing, going to IKEA, Mothercare and Pets-at-Home. Max slept throughout the entire proceedings, only getting grizzly on the last leg of the trip home.

This morning after his 7 o’clock feed, Massimo had a major coughing fit and expelled his ng tube (tube in his nose for feeding). Luckily as his next feed wasn’t due until 11, there was plenty of time for Helen to come around and refit it. Sister Theresa Alexander from the NNU also came around and weighed him. He now weighs 4.06 Kg (8lb 15 in olde englishe units). She also measured his head which has grown too much again. There are possibly a couple of other symptoms of concern that Theresa reported to Kate, one of the consultants at the NNU, who suggested we come into the unit tomorrow for a check up. We have an appointment at Gt Ormond Street tomorrow, so not sure if we will make it to the NNU tomorrow or not. Our appointment at GOS is for a Bulbar EMG, which is some sort of nerve conductance test to see what is happening with his swallowing.

That’s all for now, I will try to report on the Bulbar EMG over the weekend.

(Apologies for the ironing board in the background in the one on the left!) Please note the hand knitted cardigan made for Massimo by Ann with moral support from Lucy and Charlie (cavalier spaniels!), the stripy Gap outfit from Lisa in the Big Apple and the bootees from Tara. Thank you all!

Today we ventured forth to the park with the beasties and all went well. Unfortunately there is no photographic evidence of this but the dogs certainly enjoyed themselves. It did prove that there really is no reason for me not to take everyone out for a bit of fresh air and I hope to start doing so soon. However will enjoy having J come with me this week!

Today we went out for the first time. Just a little trip up Balham High Street, more for the excuse to go out than any real requirement. Stroller loaded high with equipment, Massimo fast asleep inside and off we went. It was a really strange feeling to be out and about with him and I was very conscious of people looking at us, the way that people generally look at a buggy and a baby!

We popped into a baby shop and bought a baby monitor which has been tried and tested but I just can’t trust it to let us know when Massimo’s tracheostomy needs suctioning! However maybe in time I’ll learn.

All seems to be well in the Hope-Mason household so far. On Wednesday Great Aunt Karin and Grandpa visited as well as our neighbour Bernie. On Thursday Julia, the Speech Therapist, dropped in for a cup of tea on her way to work (she walks!) then Helen, the Community Children’s Nurse, popped in to check that all was well. In the evening, Massimo had his first bath at home and a trachy tie change. It was all very stressful and a glass of wine was had upon completion and a chinese take-away was deemed to be as much as we could muster, luckily Luisa didn’t mind!

Today Pat, the Health Visitor, and Leah, a Practice Nurse came to meet Massimo. They will be coming weekly to weigh him and measure his head circumference to monitor any further increases in his hydrocephalus. The good news is that Massimo now weighs 3.92 kg (8 lbs 10 oz), the bad news is that his head has grown too much again. Helen popped in again to drop off more equipment including a syringe stand for feeding time which could just make life a tad easier. This evening Patrick and Ceri dropped by as they were in the area and this time we managed to cobble together some sort of supper for us to share, so our first dinner party is done and dusted!

On Wednesday one of Massimo’s hands discovered the other, last night they discovered his mouth and tonight he was very alert in the evening and started looking around but with his head as well as his eyes. What a clever little boy!

More pictures will come soon I’m sure, but for the moment our hands are full with catheters, nappies and such like.

As I said we are really quite amazed that we are at home with a little baby and I suspect that we have felt the same emotions that all mums and dads must feel when they come home with a newborn, but with one big difference which is that Massimo was born 82 days ago!

We “roomed in” at the hospital from Sunday at around 4pm and we were really worried that we would feel confined and bored within the four walls of the hospital but it all went really rather well. Our first night was, well….different to anything we had ever experienced before. Massimo was, and has been, as good as gold.
Continue reading “Coming Home and Settling In”

And Justin and I are delighted, exhausted, drained, confused and most of all quite disbelieving that our little bundle of joy is finally home. Now starts our big challenge. I will write more, soon!

Today we were allowed out of the unit again, but we weren’t allowed where there might be too many people (in case he catches something!) and of course it was such a horrible day today that going outside was really out of the question as it was too cold. So we ended up going for a coffee in the canteen again. This time, however, Justin and my brother, Toio, were there to witness the event and Massimo was awake and VERY interested in all the goings on. He is wearing (although unfortunately you can’t see it) the smartest Gap outfit, down to matching socks, which were bought for him by the Vi�a family and looking very dapper!

Tuesday is coming ever nearer, tomorrow we room in!

Good evening all

Today was very exciting but unfortunately not as exciting as I had thought! I had envisaged going outside in the glorious sunshine and walking at least around the perimetre of the hospital. Instead I was told that I had to stay not only IN St. George’s but on that floor! Luckily the NNU is on the same floor as the restaurant so a friend, Michelle, another mum on the unit, and I went off and had a coffee and a chinwag. We were allowed out for 45 minutes and it actually went by remarkably quickly.

When I arrived at the unit I gave him a quick nappy change, a feed and a suction then I put him straight in his buggy. As it was such a lovely day I left Massimo in his vest but I did put shoes on his feet just because they are so cute! Massimo settled quite quickly and then fell asleep. He stayed asleep the entire time we were out of the unit and probably didn’t even notice our little excursion!

As you can see I took a few pictures and although it wasn’t such an exciting outing I felt really unwilling to return to the unit.

Today we were taught how to resuscitate Max. We were given our very own ambu bag (see picture) which we will have to carry around with us at all times, along with half the hospital!

The training was very well done and, although we hope never to have to use it, we do have a good idea of what to do should the need arise. The trainer also very kindly said that she would be more than happy to come to the house and give us a refresher course or teach other friends or members of the family who might look after Massimo.

After our training we changed Massimo’s trachy ties. The operation is nearly as complicated as doing the trachy change – it involves everything that you do for a trachy change, minus the actual change, so quite stressful, but Massimo was a star – AGAIN – and remained settled throughout most of the ordeal. J was in the driving seat this time and I was in charge of holding the tube in place. It all went off without a hitch.

Having done a trachy change and the resuscitation training we are now allowed to take Massimo for a stroll in his (very smart American) stroller within the hospital grounds and I shall be doing so tomorrow. A nurse will probably come with us, at least the first time.

It is so, so exciting! I promise to take lots of pictures and post them as soon as possible.

Today was the big day. I don’t know about J, but I tried really hard not to think about it much as I used to ignore exams in the old days.

We turned up at about 1.45 as we were due to do the change at 2.00 and Helen, the community nurse, was already there getting things ready. Massimo needed a quick suction before we got going and as I moved him so that I could get to his trachy tube all hell broke loose! He started crying and crying and I really couldn’t settle him. He got himself so wound up that once he did sort out his problem (a rather large poo was on its way) it still took a while for him to calm down. A clean nappy and a little more clearing of wind later he just started looking around happily.

Helen was brilliant, very calming and helpful and she certainly helped me through it, and I think she helped J too, that is if the beads of sweat were any indication of his stress levels! A trachy tube change should always be done with two people, except of course in an emergency. Today J took the old tube out and I put the new one in. Massimo was a complete and utter star. He remained calm and settled throughout and the whole thing went off without a hitch. We now have to do it with J in the driving seat and me assisting him, but that will be next week either on Monday or Tuesday.

Tomorrow we are having our resuscitation training and once that is under our belt, along with the second trachy tube change we are all set for Massimo to come home. Helen will be organising for more equipment to arrive and we will ensure that by Thursday everything that we will need is here.

This time next week …. (hopefully!)